Jeanie Lawrence, Living with Lupus

If you were diagnosed with lupus in 1971 it was pretty much a death sentence.

Jeanie Lawrence was just 17 when she learned her diagnosis. She was a gymnast and began experiencing significant joint pain. Her mom didn’t believe her and thought it was all in her head. Because of her sensitive skin, Jeanie saw a dermatologist periodically. When she noticed a red rash developing on her cheeks, Jeanie didn’t hesitate to get to the doctor.

“My dermatologist is the one who diagnosed me,” she said. Jeanie had the butterfly rash, a tell-tale sign of lupus.

“Initially the diagnosis was a relief,” she said. “At least it wasn’t all in my head.”

But that relief lasted only a short time. Because of the rash and her impaired joints, people asked Jeanie what was wrong with her. When she told them, “lupus,” people felt sorry for her and responded with pity.

“At that time a lupus-diagnosis was a death sentence,” Jeanie said. She said she knew people who died of lupus and assumed she wouldn’t make it to 30-years-old.

“It was horrible to be so young and to think you didn’t have a future,” Jeanie said.

A confrontation with a robber at Griff’s Burger Bar was pivotal in changing Jeanie’s attitude about the future. She was a young woman working there when a man tried to rob the restaurant. As he pointed a gun at Jeanie she said, “Go ahead and shoot me. I’m going to die anyway.” Her defiance shook up the criminal and he took off.

Moments like that one helped change Jeanie’s outlook on life. She let go of some anger and tried to start living, appreciating life one day at a time.

One of the medicine’s Jeanie took was cytoxan, which was proven to make women sterile. In addition to believing she would die young, she also gave up her dreams of being a mother. She and her husband married and Jeanie mourned for the children she’d never have.

“That was what I really wanted in life,” Jeanie said. “I wanted to be a mom and have a family.”

Fortunately, miracles do happen and Jeanie was able to get pregnant and have healthy babies. “I was completely stunned,” she said. “Then I was scared, because I was on medicine that was tied to birth defects. But I was blessed with a healthy son and daughter. I cherish every minute with them.”

Another prescription Jeanie took regularly was prednison, which worked wonders for her. What no one knew at the time though, was that taking the drug for an extended period could increase a person’s chances of getting osteoporosis. Jeanie took high doses of prednisone every day for 12 years, then took it off-and-on for five more years. She suffers the consequences of the long-term use now with a degenerative disk in her spine. She’s had surgery for it, but it didn’t work.

Coping with daily back pain, joint pain, and the emotional trauma an additional diagnosis of fibromyalgia eventually caught up with Jeanie. She was on a pain pump with narcotics in order to cope. Foggy and immobilized, Jeanie found herself in a black cloud of depression. She disengaged in life to the point of wanting to commit suicide. She was hospitalized on more than one occasion and accompanied her husband to work at their roofing business so she wouldn’t be left home alone.

“It was the worse time of my life,” she said. “No question.”

The first step in turning her mental-health around came when her pain pump ran out of batteries. She took the pump to be replaced. Doctors discovered that the site of her catheter was infected and she’d have to take a six-week break from the pump to allow herself to heal. Not only did the wound start to heal, Jeanie’s state-of-mind started to heal as well. She discovered glimpses of her old self again. She held onto that person and has never let her go.

She still takes narcotics for pain and needed professional help to guide her out of her depression, but today she is an active, engaged, happy woman.

“A year ago I was able to help my daughter plan her wedding. We made decorations and coordinated the event,” Jeanie said. “I never could have handled that while I was depressed.”

Jeanie learned recently that her daughter also has lupus. “I cried,” she said. “You never want your children to suffer. But she’s managing it so well and so much has changed for the better since I was first diagnosed.”

Jeanie said the medical field gets a negative rap, but she’s had many positive experiences with doctors. Throughout her 40 years of living with lupus the medical advances have been life-altering and “I have a real respect for the medical profession. I’ve had lupus so long, and seen so many doctors in my time. They’ve been helpful and kind. I really do appreciate them.”

Despite her ups-and-downs, Jeanie declares herself a success story. She’s happy to be alive and happy to be…..happy.

In addition to medicine, Jeanie copes with her disease with water aerobics, supplemental vitamins, and naps. She laughs with friends in the Red Hat Society and attends church with her husband of nearly 40 years.

She cherishes the phones calls and visits with her children who live nearby. She and her daughter have a small business together selling sun-blocking hats on etsy.com.

“I’ve learned that living with a chronic illness isn’t the end of the world. It is a setback that shapes the rest of your life, often for the better.”